My Year Off Read online

  My confidence, however, remained shot to pieces, and I had the greatest difficulty in finding any motivation to participate in the physical therapy offered by the National Hospital’s rehab experts. I would be wheeled through the hospital’s labyrinthine corridors to the gym, and would lie on the chilly plastic exercise bench, barely able to move, and longing to be left alone to sleep. At this stage, the exercises were absolutely basic, essentially an attempt to remind my brain that I still had a left leg (and arm) by simple attempts to get me to move the affected limbs and to try to stand upright, a seemingly impossible feat at that time. Sarah had to battle hard to get me to respond and used to refer, ironically, to what she called ‘tough love’. I had no inkling what kind of inner battle she herself was going through at this time.

  SARAH’S DIARY: SUNDAY 6 AUGUST

  I feel so very sad and scared. R. making progress but he is so depressed and so unable to try - the smallest thing tires him out - it’s as if he doesn’t care. I worry, I worry, that this has changed him, that he is not the same man. We went into the Square, him in a wheelchair, today, and my heart just about broke. What are we going to do? I don’t know who he is, who I am, what we’ve gotten ourselves into. I feel that I have no one in the world to lean on, no one to help me. What if it never gets any better? What will I do then? If I keep his spirits up, I wonder, will I actually be able to do something for him, or is it just hopeless? I feel bone tired and not up to it, and so very, very frightened. It is as if the trap-door opened and we all fell through, and we’re just continuing to fall and fall and fall.

  7 AUGUST, MONDAY MORNING

  R. seems cheerier and more motivated this morning, a little less tired. I gave him a huge lecture last night - and then started to cry. I feel like I am floundering, not knowing how to go about this. Everyone says that if he has the will to do it he really will come right back to normal. It’s just going to take time.

  It’s amazing what your mind goes through, the stages of shock I suppose. My first thought was that he would be dead before I got back to London. Then I thought, his reason will be gone, his mind shot. Then I thought he would spend the rest of his life totally paralysed. Now I have other worries: that he’ll be in a wheelchair for ever (the worst case there is), or that he will be somehow changed, not the same man I married - dependent and depressed - his joy all gone, the light gone from his eyes. Those seem like small things compared to a death or a life, but right now they feel all-encompassing. I don’t remember what normalcy is any more. I don’t remember if that in fact is the goal. I suppose that what we are all striving for is to get him up and walking and working again, but I am wondering if I should ratchet down my expectations in anticipation of the possibility that they might be dashed again. I think of my expectations before all this: success at work, laughs and love and understanding at home, knowing that when I made a fuss during the film Jefferson in Paris R. would understand and would indulge my desire to leave in the middle and would take me home to dinner. Now what are my expectations? That he will be able to work, that we will able to live together again. That he will find his work as rewarding now as he did before. That when we have children, he will be able to take care of me some too. That one day I’ll be able to lie in bed in the morning and R. will bring me a cup of tea and give me a kiss on my forehead and tell me that he loves me, and that everything will be alright.

  I believe that at this time Sarah’s biggest struggle was with my obstinacy; and one of the battlegrounds between us was speech therapy. I found it humiliating to have to accept that, though my thought processes seemed unimpaired, my utterances needed help from a speech therapist. The failure of articulation seemed such a fundamental failure, and one that went to the core of my self-esteem. My therapist, Dr Renata Whurr, a mildmannered, friendly woman and an acknowledged expert in her field, gave me a set of exercises, which I loathed. (‘Press lips together, then release: three times. Push lips forwards, then release: three times. Stretch lips sideways, then release: three times. Repeat Ban - Bee - Boo: three times. Repeat Dan - dee - doo.’ Etc., etc. ad nauseam.) I had always spoken quickly; now it seemed that even the words I was uttering had become scrambled, although in fact, compared to many stroke-sufferers, I was extremely fortunate and never experienced the confusion of, for example, saying ‘elephant’ for ‘pillow’ or ‘banana’ for ‘knife’, or ‘Pass the dinosaur’ for ‘Pass the milk, please.’ Many people lose language altogether - aphasia: in the worst cases, left-side stroke-victims will have to relearn what words mean, and how to use them. (One woman I spoke to during convalescence, Annie Bristowe, a vigorous forty-two-year-old, discovered after her stroke that her accent, which had been ‘somewhere between Cheltenham and Chelsea’, had become perfectly Scottish, ‘like Janet out of Dr Finlay’s Casebook’.) Another famous case is the stroke suffered by the playwright, and author of A Man For All Seasons, Robert Bolt. Like me, Bolt was treated at the National Hospital but, as his secretary puts it, ‘It was very difficult to understand exactly what he was thinking because his speech was so impaired. He was tailoring his thoughts to what he thought he could say, so what came out was very simple. He found “yes” difficult, so he’d say “of course” which has overtones to it. You had to keep thinking, he doesn’t really mean that. He kept saying to a doctor that he had to tell Phil Hurricane something. No one knew who Phil Hurricane was.’ It turned out that ‘Phil Hurricane’ was Bolt’s secretary, Gill Harrison.

  I, at least, still had my voice, but it sounded peculiar to me, and I was finding it hard to enunciate properly. When I slowed down, my speech was fine but tremendously effortful. I became terribly angry about this disability, and Sarah noted that I showed flashes of anger when practising to pronounce strings of swear words, an exercise Dr Whurr had suggested. In the absence of firm direction from the neurologists, Sarah and I tended to quiz Dr Whurr for independent corroboration about my chances of recovery. In her diary, Sarah wrote that, ‘She [Renata] seems to feel he’ll be all right, but maybe he’ll walk with a limp which sounds fine - except that there is such a wide variation in “limp”. It just seems like such a small thing to me at the moment, a limp, given everything else - but I know that even that can be devastating.’

  In the week following the stroke I had been unable to look in a mirror, and I was beginning to worry about my appearance. On Monday 7 August I noted in my diary,

  I shave sitting in the bath, looking at my reflection in the bath taps. I have not seen my face in a mirror since I fell ill, and I’m frightened at what I might find. (In fact, apart from a slightly drooping left side to my face and an expression of great sadness, I find that I am not a freak.) Afterwards I clean my teeth one-handed with considerable difficulty [it’s suprisingly hard to unscrew a tube of toothpaste one-handed] and get given fresh clothes. Then I am wheeled back to my room. Now I am sitting in a chair with my headache and Sarah is on the phone. Sarah seems to have understood my condition very well, and is tremendously organized. She is being quite amazing. At 12.15 Dr Whurr comes in. She arrives half an hour after Dr Lees who has pronounced my progress to be ‘very encouraging’.

  This morning Sarah read to me from Alice in Wonderland once again and we laughed together over Bill the Lizard. It occurs to me that as a patient I am regressing to a state of childhood in some ways, surrounded by parents, waited on hand and foot. I feel like a child, and helpless like a child too.

  When I read my notes now I’m reminded that I became at times quite irritated by the intrusions of the medical profession, and wanted to be left alone with my fatigue, which was still overwhelming: ‘All these professionals feel they have the right to ask impertinent questions - Q: “Are you depressed?” A: “Yes, but it’s none of your business.” Q: “How does your speech sound to you?” Answer: “Blurred.” It turns out that I am reading too quickly. To top it all, yesterday, I bit my tongue as I was eating. It is still very painful.’ Half my tongue was still paralysed: I could not feel or control its movement inside my mouth.<
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  SARAH’S DIARY: TUESDAY 8 AUGUST

  I feel shattered. It’s been hell - and with each day, a fresh round of horror to deal with. Robert’s stroke is really quite severe - nine days into it, he still can’t move his left arm and his left leg, and his speech is quite thick and stuttery, because he’s numb on the left side of his face. His mind isn’t affected, but he’s so very depressed and so very exhausted that it’s torture spending time with him. I’m so relieved he’s not dead. I’m so scared he’ll have to be in a wheelchair. I’m so scared that what we’ve had together - the wonderful flushes of first love, but hardly years of time built up together to cushion blows like this - will all evaporate now, and that our life together will never be good again. I’m scared that what we’ve had will evaporate for him, that he’ll remember it as some distant flash of memory, that what we’ll have to do is get to know each other again, in a new way, filled with this bitterness (and my bewilderment, and anger, and fear) that this has happened to us. I think - I think - I worry - that I’m just not strong enough to bear it.

  I keep thinking: If he’s okay in three months, in six months, in a year - he’ll be okay. But what if he comes home, and he can’t walk properly? How will he handle it? How will I? I can’t be strong enough for both of us, and R. has such a hard time expressing his feelings - such a hard time, it was just starting to change, things were just starting to get so wonderful, he was being so sweet and so cuddly and such a good husband - and I worry that it’ll all go back to some horrible situation, where he hates me and where our life together doesn’t mean anything at all.

  There are moments I feel that almost approximate happiness. Tiny little moments, when I forget, when the phone rings and I think it’ll be him, saying, ‘Hello, Mrs Wife,’ and we’ll be planning our evening together. Then I can disassociate myself from it, and say, ‘Robert’s had a stroke,’ and consider it just as a fact from far away - not as an organic reality whose implications will reverberate for months and years to come.

  My concerns, meanwhile, were strictly practical:

  8 AUGUST

  I think the worst part of being so helpless is the nurses’ attention to one’s inevitable ‘bowel movements’. Two nurses lift me onto the ‘commode’, a wheelchair with a hole in the middle. Then they wheel you into the lavatory, pull your pants down and leave you to it. When you’ve finished you pull a kind of communication cord [setting off a buzzer at the nurses’ station] and they come and wipe you down and wheel you back to bed. It’s messy and humiliating and I dread it. How low and/or helpless can one become?

  On some days, the highs and lows seemed to follow each other in a confusing procession and my mood would seesaw wildly. When I was able to show Dr Lees the movement in my left leg - my left arm, hand and foot were still paralysed - Sarah’s diary reflects our excitement:

  WEDNESDAY 9 AUGUST

  Signs of hope. R. is speaking much more clearly and beginning to move little things - flexing his leg, from side to side, as he sits in the chair. Today he stood more or less by himself. Dr Lees said it looked very very encouraging and the physiotherapist came by and looked at him and said he would definitely walk again (how well, I suppose we don’t know just yet. We don’t know how much of it depends on his own will and how much on what’s going on in his brain). I feel resigned to six horrific months, so long as there is hope at the end of it.

  Meanwhile, the investigation into the chambers of my heart was scheduled to continue a few streets away at the Middlesex Hospital, a journey that, in my helpless state, involved being stretchered in and out by ambulance, a laborious procedure that reminded me, as I watched the workaday world hurrying past, how ‘disabled’ I’d become.

  MY DIARY: THURSDAY 10 AUGUST

  Sarah arrived like a breath of fresh air, or like a ray of sunshine, at eight-fifteen. I have had a poor night and a very early wake-up, so it’s wonderful to see her. Yesterday afternoon, after the tests on my heart, as I waited at the Middlesex, helplessly, for the ambulance, I found myself reflecting grimly on what it means to be disabled, and in a wheelchair. In the waiting room there’s a huge box labelled ‘Human Blood’. I wonder whose?

  It was during this visit to the Middlesex that I found myself confronting my incapacity in my mind and making a kind of resolution to resist it, come what may. As I put it in my diary:

  I made a kind of private vow to myself that I will not be in this state for long, if I can possibly help it. Being a patient is, as the word implies, totally passive. You are dependent upon the nurses; you are always saying thank you and falling in with the nurses’ jokey routines. If you don’t, you become a ‘bad’ patient, to be punished in all kinds of subtle but unmistakable ways. The point is to be passive and appreciative.

  Yesterday, I had what I think of as that Alice in Wonderland feeling again. Queen: ‘Sentence first, verdict afterwards.’ (And the fact that the words don’t come out right, like Alice.) I wrote four postcards this afternoon - with instant tiredness and some difficulty, but ultimately a sense of achievement: communication achieved, despite everything!

  The reality of my office was never far away during these weeks. The Faber headquarters, at No. 3 Queen Square, were, as the crow flies, barely two hundred yards away, facing the National Hospital. I was always conscious of my professional life just across the frontier of ill-health. Inevitably, with so much time on my hands, my thoughts returned to the beginning of my life in publishing. One particular evening, a celebration dinner for Peter Carey’s first book, The Fat Man In History, lodged intransigently in my mind. The dinner was held by Matthew Evans at his home in Canonbury Place and we all drank so much wine that when Matthew woke up next morning he later said (I remembered in hospital) that he thought he’d ‘had a stroke’.

  MY DIARY: THURSDAY 10 AUGUST

  A smoked salmon salad has just arrived from the River Café - at first I was a bit embarrassed by Ruth Rogers’ extraordinary generosity, now I’m just incredibly grateful - and my room is full of delicious smells. Mum and Dad have just arrived, faintly scandalized by these scenes of luxury. When they are in the hospital they behave as if visiting a school on Speech Day, very gracious and grateful, with words of interest and encouragement to all concerned. Sarah returns at about six, and we watch the closing stage of the first day of the Test match on TV. She announces that her new shrink has told her to tune into her inner being, to see what is in her nature.

  SARAH’S DIARY: 10 AUGUST

  Horrible, fretful, fretful dreams. I dream that I was with someone who fell down a hole and no one knew. I just left him there, to die, and felt that I had murdered him (R? Probably). I think I then murdered someone else - there was a horrible scene where I set up a whole party for this person - food and drink and everything - and I pretended to wait for him to come when I knew he never would. And then there was a scene of carnage, where another woman went crazy and shot a lot of people and my own crimes were overlooked in the confusion. I let everyone think that it was she who had killed the people I had killed. Then someone came with me (someone who believed the story that I was innocent) back to the place where I had been living and helped me remove my things.

  The idea was that I was leaving for Europe for a year or so, and that I would travel on my own with just a few possessions and that it was something I felt I should have done long ago. But I was going with this enormous weight of guilt upon me.

  I’m really not very hard to read, am I? I look at Robert sitting there (he is reading the newspaper, folded on a tray in front of him for convenience) and I’m filled with so much love for him, and so much fear for the future.

  Evening. It’s so hard to be back at work, because it reminds me of the lovely luxury of normal life. Walking around, coming and going as you please, making telephone calls - all the things R. can’t do, at the moment. I feel so guilty that I can, and so angry that when the phone rings it’s not him with authority in his voice saying, ‘What’s happening?’

  As my recovery str
etched into its second week my initial fears that I might suffer a second, and more severe, ‘insult’ began to recede. Obviously I was getting better. However, I was still terribly confused, chiefly about the passage of time.

  MY DIARY: FRIDAY 11 AUGUST

  I calculate that I have been ill for about ten days, though I’m not sure about this. I don’t feel dangerously unwell, though paralysed of course, but I suppose I was very ill for a day or two.

  Today there is a big scandal in the ward. A chap in the room at the end has refused surgery. This is unheard of, and everybody is up in arms.

  Like patients the world over, I became very attached to the nurses in the Nuffield. I found them amusing, sexy, attentive and, of course, tremendously caring. How could I not? This was an intense period of my life, and they were an intimate part of it. Occasionally, as I began to get better, one or two of them would come into my room towards the end of their duty hours and sit at the foot of my bed, and we’d chat. I’d learn about the ways of the hospital, who they liked and disliked; who was well and who was sick; who was mending, who was not. There was a secret narrative to the Nuffield ward of which I was just a tiny part, and it was intriguing to find out about the neurological dramas in the adjoining rooms. There were all kinds of tiny nuances to hospital life of which I was totally unaware, and of which I gradually got the hang the longer I stayed there. When individual nurses went on holiday, I found I missed them intensely. When my favourite nurse, Julia Baretta, came back from her holiday I wrote, ‘Julia is back today, thank God!’ Meanwhile, the routine went on, seemingly at a snail’s pace.